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Feb 1, 2010

To Keep Myself Well

Today I found the Spoon Theory.  And everything stopped. I had an Oprah 'Aha Moment'!!

It is simple story telling how a woman with Lupus explains her disease to her healthy friend. She uses spoons to describe how each and every day, she only has a limited amount of energy, and how she has to choose how to use it.

For me personally it has been difficult to explain the full extent of my illness. I don't have a cane, a wheelchair, or anything blatantly obvious. My scar hides behind the comfort of my shirt or dress. When I am sick, it is usually in the privacy of a bathroom. And who really likes to talk about that??

If I am going away, I have to rest constantly beforehand. If I don't, I pay for it in the weeks after my return. I am still trying to catchup from my trip away at Christmas, a month on.

I am still trying to work out my work/life balance. Right now, I do some part time, unpaid PR/secretary work for a few not-for-profit organisations. I babysit one or two days a week, which I absolutely love. With the PR/Secretary work, I can do it from home, from the comfort of my bed if I have to. The babysitting stuff constitutes what amounts to my outings. I usually do my shopping with either one of both of the kids and it works for me.

Combining babysitting with shopping also has a beneficial, somewhat unexpected side effect: it helps me with my panic attacks! I find I can deal with them quite well when I have something to focus on, and have something to interact with. And if it ever gets too much I just go and put the kids in the playroom for half an hour and watch them play: always a distracting activity!!

With a chronic illness like Crohns, it is a hard thing to find balance. If it isn't one thing, it is another. So please, be patient with me, friends and family. I am trying to keep myself well, not work myself into the ground and end up in hospital.  Patience, kindness and understanding. It is all I want.

Jo

4 comments:

Lorena said...

Wow! It seems like you have a lot on your plate. Congratulations, it seems like you're doing well, all things considered.

Mum said...

Your words remind me of the time I was struck down with my auto immune disease. While trying to home school you and your brothers by 10am I would have to go back to bed for a while due to sheer exhaustion.

How blessed I was to have 3 special children who were so understanding and helpful. May you too receive that same understanding and helpfulness as you continue on your journey...
Love Mum

shadowspring said...

Wishing you rest and healing. ((Princess Jo)) My beloved twin sister has chronic Lyme so I totally understand your need to rest.

Jennifer said...

As you know, I totally get what you are saying, maybe not from the perspective of a Crohn's patient, but as someone with chronic illnesses. I have shared The Spoon Theory multiple times, and think it is a wonderful resource. These illnesses can become so hard to cope with, both physically and emotionally. And that balance is hard to find at times, but so necessary, I hope you hope you continue to find balance in all of it, and think it sounds like you are on a great path to it.

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